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Does MG affect how others treat you?
Myasthenia gravis is often invisible. You might look “fine” one minute and be unable to walk the next. That unpredictability can impact how people respond, from coworkers and friends to doctors and even strangers.
- Have you ever felt misunderstood or judged because of your MG?
- Do people treat you differently when symptoms are visible?
- How do you explain your illness when you choose to?
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3 Replies
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- Have you ever felt misunderstood or judged because of your MG? Yes, I feel this way a lot. So many people have said their friend or co-worker or relative has MG and they are just fine – can’t even tell they have it. They only response I have been able to come up with is that is wonderful and maybe they are in remission and I hope I will be in remission soon.
- Do people treat you differently when symptoms are visible? Yes, some show concern while others completely ignore me. Being completely ignored is hard. Some of my friends seem to think I just don’t want to socialize and I am using MG as an excuse.
- How do you explain your illness when you choose to? I say I have a neuromuscular disease and on some days I am fine but on other days I have trouble walking or talking and I suffer from severe fatigue; muscle weakness; blurry vision and on and on. I explain this disease is like a “snowflake” – no two MG patients are the same. I may ask them to google Myasthenia Gravis to learn more about it. I explain that I had a breathing crisis and had to be hospitalized and receive plasmapheresis. I tell them about the immunotherapy infusions I receive (similar to cancer patients). I tell them about all the pills I take and the hideous side effects of prednisone.
Now that I have accepted the fact I have this disease, struggling with other people’s opinions has been a major issue for me. I typically don’t care what other people think of me but this is somehow different.
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Thank you for opening up about this. What you describe is something many with MG experience. The weight of others’ opinions can feel very foreign regarding health. It’s not easy to accept the disease itself, and then also have to manage how others see it. Permitting yourself to focus on your reality rather than trying to meet others’ expectations can help lighten that load. Easier said then done, but I hope you feel understood here. If you have yet to, and if you have FB, I encourage you to check out our new support group: https://www.facebook.com/share/g/1B34cLNMw3/?mibextid=wwXIfr
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Thank you. I appreciate your input.
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